Written by Jo
Someone with Cancer, Parkinson’s, or Multiple Sclerosis, wouldn’t be expected to cure themselves with positive thinking. So why am I expecting it to solve my ME?
One of my meditations encourages ‘visualising what you desire’. I visualised walking (dog included), running for the joy of feeling fit and healthy, running races again, 5K, 10K… achieving my old half-marathon aim!
Afterwards, I felt hopeful and organised my mobile phone screensaver with inspirational photos to get me to where I want to be. But I also need to ‘surrender and trust’, says the meditation.
Does using inspirational images to urge me on to reach my goal suggest that ME is in my mind rather than being a physical illness? From my research, I know intellectually that mind and body are linked, but am I able to internalise it? Do I really believe this? Can my mind cure my body?
If my visualisations and inspirational pictures cause me to generate adrenaline, then, of course I’ll feel better in the short term and may reach my ‘sit up, walk unaided’ goals, but I need to be able to sustain my energy. If I exceed my threshold it will result in a relapse and post-exertional malaise, and I will be back to where I began… or worse.
I feel an underlying fear triggered by these inspirational images. Fear of raising my hopes only for them to be dashed yet again. But why is this a fear? I am resilient enough for my hopes to be dashed another million times over, am I not?
There is a deeper fear, as my mind projects into the future, of the responsibilities that will be heaped upon me. Having to be available for everyday routines that I struggle to complete; for attending functions that I struggle to go to; for making polite conversation that I stumble my way through; for supporting people when I’m unable but feel I must; and for situations that completely overwhelm me, but that I have to face.
Having to ‘show up’ when feeling that I don’t want to or don’t have the energy to, but feel unable to say no to, is a fear born of years of experiencing undiagnosed ME in its milder forms. Of everyday life being one long, hard struggle. But these responsibilities come from within me, they are the responsibilities that I place upon myself. Why?
Again, it’s the old fear of confrontation, of upsetting someone, of people thinking badly of me. Going along with the status quo, because it feels too difficult, too energy consuming not to. Second-guessing my decisions because I beat myself up about them if I make the wrong choices. It’s exhausting!
Currently, I’m not able to make many choices. Having paid carers and others to do things for me, is helpful in that it conserves my energy. It also means having to relinquish my life being run in the way that I like, parting company with the joy of doing things for myself and saying goodbye to the feeling of independence and of accomplishment that I used to enjoy.
Routine hospital appointments mean being moved physically, being transported, being talked over, having very few, if any, decisions to make. Is this an acceptable place? Is this where I want to be? No, it isn’t but I don’t really have a choice.
Visual and inspirational targets can cause me to berate myself because my ‘positive thinking’ isn’t positive enough to make me well, i.e., it must be my fault that I am bed-bound and unable to do look after myself.
When there is evidence of a physical cause for ME and a diagnostic test that says ‘Yes. You have ME’, maybe I can accept that it doesn’t matter how much positive thinking I do, I can never be well without medical intervention or a cure.
Someone with Cancer, Parkinson’s, or Multiple Sclerosis, wouldn’t be expected to cure themselves with positive thinking. So why am I expecting it to solve my ME?
‘Surrender and accept what is…’ the meditation tells me. Easier said than done, but I think I need to manage my own expectations.
If meditation can take me outside of ME for even a couple of minutes, provide a measure of escapism and helps me to relax, then I feel it’s worth it and perhaps that’s all I should expect.
Feedback
Do you use meditation to help you cope with a life of ME? Does it help? Is it difficult to achieve?
Please share your experiences in the comments sections on social media, or send an email to: feedback@meassociation.org.uk
Thank you!